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Parents of Preemies

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New to community [28 May 2014|04:05am]
My name is Virginia, and I am the mother of 3 surviving premature children who are now adults. I also have 13 angel babies, lost to miscarriage.
Our first child, Mary-Alisson was born in 1982 at what was thought to be 26 weeks gestation. I was seeing a family practitioner and due to bleeding throughout the pregnancy I actually was delivered 3 days before my due date. It was later figured out that I must have lost the original pregnancy and became pregnant without realizing it at the time. I had been having contractions and went to the hospital and was sent home 3 days before I delivered. At that time the doctor on call that saw me told me that the baby was about 5 lbs and that I should deliver within the week. 3 days later my water broke while at home and I returned to the hospital. After laboring (with few contractions for 18 hours) my GP finally called in a OB who took one look at me and realized that the baby was in distress and within minutes I was in the OR having a emergency C-Section under general anesthesia. When I woke up, I was told that I had delivered a baby boy and that he was being sent to another hospital, one with a NICU. Not long after my husband came to see me and I asked him if he had seen our son yet. He looked confused as he had been told that we had a little girl, and the same thing about the transfer. We finally learned that the baby I had given birth to was a little girl. Just before the transfer ambulance came I was woken up and asked what I was naming the baby. The name had been an issue if we had a girl, as my husbands family traditionally named all babies after the grandparents on that side of the family. I was so out of it and with all the name issues, I said "I don't care what you call her, name her Garbage Pail or ask my husband, just get her transferred." The name issue was a sticking point for months and I was not thrilled with the name my mother in-law was called "Rose", and had learned that her birth certificate actually read as "Maria Rosa". We ended up naming the baby Mary, the American version of Maria and Alisson, the modern name for my Grandmother Alice who was close to death at the time, with a hyphen between and no middle name. The odd spelling comes from my husband asking me to spell it while I was still feeling the affects of the anesthesia and pain injections I was being given. Funny thing is that a few months later we got a letter in mail and enclosed was a death certificate for "Garbage Pail Briguglio." Clearly a error was made as my daughter was alive, but still in the NICU. We later had it corrected to a live birth certificate for Mary-Alisson. Mary's weight was 2 lbs 13 oz and 16.5" long. At the time she was the second smallest graduate of that NICU, when she left some 3+ months later.
Our second child, Emilee-Ann Aubrey was born in 1989 at 34 weeks gestation. I was closely followed by a group of OB's and was in and out of the local hospital with early bleeding, later with a blood clot in my leg, and then several times with pre-term labor. I was finally admitted and transferred to a high risk unit. I had wanted to be sent to the one closest to home to make it easier on my husband to visit and my best friend worked as a research RN at the time in the NICU, on the Surfactant Study's being done. Other-wise I would have to be airlifted to a hospital several 100 miles away. It all depended on who had a bed available... I was thrilled when I was admitted to the closest hospital, the one I wanted to go to! I was in that hospital for 3 weeks before I was given a repeat Classic C-Section at 34 weeks. She weighed 5 lbs 3 oz and was 18" long. She came home just over a months stay.
Our third child, John-James Anthony was born in 1989 at 30 weeks plus 3 days gestation. I was again in and out of the hospital with early bleeding, this time I was also admitted due to severe Asthma attacks at about 3 months along several times. I had gotten permission from my OB to travel to my parents out of state for a week, for a family reunion at about 20 weeks. Being at my parents was a vacation as I would have help with the girls and be able to rest more than I would if at home. Just before leaving I knew I was starting pre-term contractions and went from the airport to the hospital and stayed 24 hours for "re-hydration". I came home and started at home monitoring on contractions. That lasted a few weeks before I was admitted and had to stay until I delivered, again by Classic C-Section, some 10 weeks later. My son weighed 3 lbs 9 oz and was 16" long. He came home after a 7 week stay.
All three children had the typical preemie issues, and spent time on a ventilator, had to be under Bili-Lights, etc...
I am blessed that although all three have life long medical issues, the only issues from the early arrival was lung damage that lead to Asthma. They all have other issues, but are auto-immune related (both girls have Lupus, my son is a Type 1 Diabetic, the 2 younger ones have GI issues, and my son had Chiari-Malformation surgically corrected. Plus a few other things) The girls are both married and each has given my husband and I beautiful Grandchild. First Emilee had a little girl, and 2.5 years later Mary a son both came the normal delivery route and are happy and healthy children.
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I was a preemie and so was my daughter [08 Apr 2009|08:03pm]
Your Name & Age: Nancy, 33
Child(rens) Name & Age: Laura Cate 4 yrs old
Child(rens) Date of Birth: January 1, 2005
Born At *how many weeks*: 34
Weight & Length: 7lbs 10oz, 21in
Tell us about yourself:

I am a stay at home mommy now  going back to school to finish a Ph.D. in forensic anthropology. (I was a preemie too at 31wks). I used to be a NICU nurse for 6 years until I found out I was pregnant. My pregnancy was what I would deem a murphy's law pregnancy, because anything that could go wrong did.

I found out at 4 weeks I was pregnant. At 12 wks I started bleeding and contracting. They started me on terbutylene and put me on bed rest. I was sent to a perinatologist who then told me I was a gestational diabetic. Insulin dependent. So I was injecting myself with insulin 3 times a day. I saw the perinatologist once a month. They took me off bed rest at 21 weeks and I went back to work and the first day back I passed out. My heart murmur was acting up so... back on bedrest. YAY. At 32 weeks I started non strest testing twice a week. On Dec 31st, my daughter had a decel (heart rate decreased) and I had A LOT of protein in my urine not to mention the headache. My blood pressures were high. SO... I had PIH. They did an amnio in the office and then my perinatologist told me "you go to the hospital RIGHT NOW..." I get to the hospital and I'm in tears (because I know what's happening). Their big plan was to keep me on bed rest in the hospital until 36 weeks... Not so... I was put on an insulin drip and my room had to remain "calm". I watched the fireworks on TV as people were cheering from the strip. (I live in Las Vegas)... and they gave me a sleeping pill .. but I started contracting.. so they checked me and I was starting to dialate... SO needless to say I went to sleep through the contractions. The next morning ... Laura's heart rate had another decel and my pressures were very high. So they decided to do an emergency c-section. I was preped and ready to go in 15 min. As soon as she was out.. the anesthesiologist said "dr. her blood pressures are very high, I am giving her something" and then she said "I think she's seizing". and I was. I had a seizure in the operating room.. I was then placed on magnesium sulfate and anti-seizure medication and still on the insulin drip. I remember waking up in adult ICU. I spent 3 days in ICU and didn't see my daughter until after that. She was in the NICU for a week. I had a horrible recovery.

My husband and I are talking about having another baby and thankfully I have no adverse effects. In fact since having Laura I've lost over 145lbs. 

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[28 Feb 2009|10:19pm]

I've just started a community geared towards former preemies - former_preemies and I'm trying to get the word out. If you are a former preemie, please join! Parent of a preemie? Feel free to hang around. Know an older preemie? Encourage them to join! There's not a lot out there about the experience of preemies once they've moved past childhood and I'm hoping we can get something started.
Jules at former_preemies

x-posted all over the place, please remove if this is considered inappropriate here.
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New to everything & Looking to network [04 Nov 2008|11:57am]

[ mood | nervous ]

Your Name & Age: Rebecca 21
Child(rens) Name & Age: Dain & Kori 3 months
Child(rens) Date of Birth: July 31, 2008
Born At *how many weeks*: 34 wks.
Weight & Length: I really don't remember length.  Dain - 2lbs 12oz  Kori - 4lbs 6oz
Tell us about yourself:
I'm married to a wonderful man.  He works as a security guard while I stay at home with the kids.  We are currently living with his mom and step dad.  They are wonderful people.  I like that they are not afraid to tell us what is going on with them.  Currently everyone in the household is either in debt or going to be shortly.  At the end of the month, I will loose the internet.  I totally don't want that to happen as it is my only connection to the outside world, at this point.  Also I suffer from PPD and it has been interesting.  With all the ups and downs I would say this is the most exciting part of life and also the most turmatic.  I would love to meet people and exchange things (I.E. thoughts, ideas, etc.)

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hi! [15 Sep 2007|12:12pm]
Your Name & Age: Lindsay, 19

Child(rens) Name & Age: Levi Josiah, born on Monday, September 10th, 2007. 5 days old.

Child(rens) Date of Birth: September 10th

Born At *how many weeks*: 34 weeks 4 days

Weight & Length: 4 pounds 3.1 ounces, 17 inches long.

Tell us about yourself: I was induced due to pre-eclampsia and gave birth to my son at 34 1/2 weeks. He's in the NICU right now, though he's doing really well. He never needed oxygen and hasn't had any real feeding difficulties. He's off his IVs, antibiotics, and in the open air bassinet now, though they have him under the billirubin lights at the moment for mild jaundice. We're hoping he'll come home in the next few days.

Coming home and leaving my baby in the hospital is the hardest thing I've ever had to do in my life. It'd be nice to talk to other preemie parents. Thanks!

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[08 Sep 2007|09:52pm]

Your Name & Age:  April, 32

Child(rens) Name & Age:  Sophia, almost 4yr, Connor, 11months

Child(rens) Date of Birth:  Sophia- 9/30/03, Connor- 10/9/06

Born At *how many weeks*: Sophia was born at 24 weeks so she's my preemie, Connor born at 37w5d, my full termer.

Weight & Length:  Sophia- 1lb 12oz, 13.5 inches, Connor- 6lb 90z, 19.5 inches

Tell us about yourself:  My name is April and I have 2 children, Sophia, my preemie, and Connor, my full termer.  My pregnancy with Sophia was very hard. I had issues with bleeding on 2 occasions before finally ending up in the hospital at 22 weeks.  It was discovered that I have an incompetent cervix so I had a rescue cerclage placed. Unfortunately, 2 weeks later, it failed, my bag of water got a leak, and Sophia was ready to enter the world.  She was born at exactly 24 weeks and stayed in the NICU for 5 months.  She endured a grade 3 IVH, stage 3 ROP, a long battle on the vent and ultimately came home on both O2 and an NG feeding tube.  Sophia will be 4 yrs old in less than a month and she is absolutely amazing. She is now about 38 lbs and 42 inches tall.  She just started preschool last week and starts dance class this week.  She has no ill effects of her prematurity and has far surpassed her doctors expectations.

2 years after having Sophia, I decided I wanted to try again. 5 months later I found out I was pregnant again. I was scared but hopeful.  After much discussion with my OB, I had a preventative cerclage put in at 13 weeks.  I had the easiest pregnancy this time around!  Other than some normal pain towards the end, it was great. My cerclage came out at 37 weeks and due to several different factors, it was decided that I would be induced. I was induced at 37w5d and it was wonderful! I delivered my son without any medication and it was great.  He was born weighing 6lb 9oz, 19.5 in long.   He will be 1 yr old in a month and is an absolute joy to have!

I hope that my story will be helpful to other preemie parents. I look forward to being a part of this community.
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[04 Jul 2007|10:32pm]

[ mood | cheerful ]

Your Name & Age: Brianna~ 21
Child(rens) Name & Age: Alexander & Benjamin - 6 months today!
Child(rens) Date of Birth: 1/4/2007
Born At *how many weeks*: 32
Weight & Length: alex was 2lbs 9oz and ben was 2lbs 12oz. i don't remember lengths.
Tell us about yourself: I'm 21, stay-at-home mommy, living in the middle of nowhere... lol.

alex & ben's story...Collapse )

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Formula Q [21 Jun 2007|06:19am]

K, yesterday I started Jon on powder formula, as opposed to the ready feed we got from LLUMC.At times it seemed Jon would just eat the ready feed and still want more, however he would "graze", eat a lil here and there, sometimes taking an hour and a half to eat, including breaks for him to catch his breath or to just rest a bit., which I noticed isn't as much as when the nurses would feed him or tell me how he should be fed (I realized it may take longer but it's easier on his time, and not force it. I mean, as long as he's gaining and eating well why should it matter, right?).....

With the powder he's eating twice as much in one feeding and still gets up every hour it seems wanting more......so my question is: does powder formula do that? Where they will eat alot and seem to not be satisfied (so it seems) for longer periods of time (2 1/2 to 4 hours lie on ready feed if he were to eat that much.....he has but ir was once a day or two).

And the bubbles suck. Does that contribute at all?

I mean I had to stop using the preemie size bottles ( 2 oz and lower) to measure his food, now I gotta use my reg bottles cause we'd make a preemie one, he'd eat it all and want another right after. Plus it's easier to shake up in the bigger bottles.

BTW, I am not off on measurements of the water and powder either......in case that is asked as a factor.

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Bittersweet Joy... [07 Jun 2007|10:58am]

[ mood | excited ]

I finally went and met with an ob specializing in high-risk pregnancies. He says that from what I have told him it sounds as though I had correo-amneincitis (sp?) If that was the case I have a very good chance of having a full term pregnancy! I am very scared, my son is 7 now, and I've been married for 3 years, I feel that if I wait any longer it would be unfair to the new baby and my son. I get my IUD out on Tuesday, and I guess take it from there. Any advice or opinions would be great =)
Thanks, Tara

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Hello [31 May 2007|08:11pm]

[ mood | amused ]

Your Name & Age: Melissa - 24 years old
Child's Name & Age: Luz - 5 months old
Child's DOB: 12/29/2006
Born at *how many weeks*: 35 weeks
Weight & Length: 5lbs 5oz 18 inches
Tell us about yourself: Well I'm a first time mom. My husband and I have been married 4 years now. We had been planning to wait a few more years before trying to conceive. So imagine our shock when the horrible stomach flu I had was really because I was pregnant. Less than a month later, I was hospitalized with dehydration and diagnosed with Hyperemesis. It all snowballed from there. I was in and out of the hospital. I had a PICC line put in 4 times (2 were removed because of infection, another stopped working). I was given nutrition through my PICC line (TPN) until even that made me ill. I couldn't take care of my personal needs and was on complete bed rest. My liver was being damaged, my gallbladder was messed up and causing me acute pain, my anti-emetics rarely worked (all my meds were given through IV because I couldn't swallow pills without vomiting), I had acid reflux bad enough to cause my esophagus to bleed, and I couldn't even drink water without vomiting. I lost a lot of weight and was becoming at risk for metabolic acidosis. Then we found out that IUGR was coming into the mix so it was decided to induce labor once it was verified her lungs were mature (during one of my hospital stays I was given the steroid shots to help her lungs mature because my condition was uncertain). We induced at 35 weeks and I thought all would be well because they told me she was going to the regular nursery. And she did but then she had to go to the NICU because of fluid in her lungs. She also couldn't maintain her body temp. She was only in there a week but it was the longest week of my life. But she's home and doing great now. So that's our story. :)

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Hello [31 May 2007|04:04am]

[ mood | awake ]

I just wanted to say hello and share a little bit about myself and my son.

I am 38 years old and a first time mother.  My son, Jose, was born on July 19, 2006 @ 27weeks (and change as the doctors said since we missed 28 weeks by a few days).  He was 2lbs 9oz.

We had a difficult pregnancy.  I was a gestational diabetic and was place on medication and a strict diet.  I actually lost weight throughout my pregnancy.  My doctor kept increasing my required calorie intake, but my foods were so limited it was difficult to do.  It was also known that I had at least one rather large fibroid that was growing right along with my son.  Also a few months in at least 3 smaller fibroids were discovered.

Everyone kept assuring me that my son was doing just fine and all the tests were showing wonderful results.  Then unexpectedly I started having stomach pains. Since I had never been pregnant I basically felt constipated and tried to deal with the pain for at least 1/2 a day before it was doubling me over.  We rushed to the hospital where I was immediately admitted and pumped full of drugs.  I was then  transferred by ambulance to another hospital that had a more equipped nursery for pre-mature births.  I was given steroids to help develop my son's lungs along with muscle relaxers so strong they blurred my vision.  Amazing how far "out there" I was for a week.  Eventually the drugs stopped working and the contractions came back and were uncontrollable that is when the doctors told us we would be having a baby that night or early next morning.  And so it was my son was born the next morning.

We went through it all.  He was bruised from my pushing, tiny and jaundice.   He was a week old before I got to hold him.  I could cuddle his whole little body in one hand (not including his legs and arms) I'll never forget the overwhelming emotion of laying him on my chest and being able to feel his warmth.  It still makes me tear up to think about it.

Well, in an attempt to make a long story a bit shorter.  We survived the NICU and Jose came home to us on Sept. 13.  His development is right where it should be for his "corrected" age.  Sometimes I get discouraged because other babies his age (10 months) are ahead, but I have to remind myself that he wasn't due until October so his first few months he was just growing as if he was still in my belly.  

He is now 27 1/2 inches long and weighs over 17lbs.  Everyday I learn something new about him and his personality.  All I can say to all preemie parents is always have hope.  Technology today is amazing.  20 - 30 years ago most babies like ours would not have made it.  We truly are blessed.

I am glad to be part of this community and look forward to reading/sharing more as time goes on.

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Hello! [02 May 2007|11:23am]


Your Name & Age: Michelle, 29 years old
Child(rens) Name & Age: Lukas William
Child(rens) Date of Birth: 2/1/2007
Born At *how many weeks*: 32 weeks
Weight & Length:  4lbs 9.4 oz
Tell us about yourself: I'm now a SAHM, I resigned from my job on May 1st. I just couldn't face going back to work and leaving my little boy. He is growing well now and developing as he should I suppose. My husband and I made some sacrifices to allow me to stay home and I think it's the best decision ever!

I had a difficult pregnancy to begin with from the momenty I found out I was pregnant. I used to kickbox often, and one day while walking into work I thought my period had started but it was so heavy. The doctors told me I was pregnant but they didn't know what was wrong and the bleeding wouldn't stop. Eventually the found a tear in the placenta that did heal but never fully. Throughout my pregnancy I endured occasional bleeds, and later in the pregnancy I had severe back pain which now I suspect was real contractions and not braxton hicks.
My EDD was March 21st. But on January 30th at about 7:45am my water broke. I went back to the hospital immediately (I worked the graveyard shift at the hospital) abd they worked me up and found that I was having faint contractions in my back and I had lost most of my amniotic fluid. They couldn't give me anything to stop the contractions so they put me on bed rest in hopes of stopping the contractions naturally and antibiotics to avoid sepsis in me and my boy. The dud ultrasound sonce a day to make sure there was enough fluid and kept me in bed, they told me they would keep me there as long as they could. I wasn't happy at the prospect of spending up to 8 weeks opn bedrest IN the hospital while my husband and my 13 year old son had to go on about their lives without me.  But I knew the baby was in danger so I sat in the hospital. On February 1st we did our daily ultrasound and the perinatologist told me that there was no longer enough fluid for the baby and he thought they should induce. At 7:21pm they induced and by 11:54 pm I had the most beautiful tiny baby boy. But, of course I didn't get to hold him, they whisked him off to NICU and I got to see him 2 hours later. He spent 2 weeks in NICU. When he came home I was so nervous! They didn't send monitors so I held him all the time just to make sure he was still breathing. He was 3 months old on May 1st and growing like a little weed. Our only problem since he came home has been my diminishing milk supply, I haven't been able to pump enough to really even feed him, so he has been formula fed for about a month now.

I know my experience was not even half what some of you ladies have endured. My heart goes out to you all and I hope to find some friends in this community. Families in New Mexico would be super, but anyone, anywhere can add me or respond.

I do have one question. Have any motheres here had trouble with their milk supply diminishing after their babies come home? I am trying to re-establish my milk supply and my doctor and the baby's doctor says it can be done, yet I am not having alot of luck. And the guilt is just horrible that I can't seem to give my baby what would be most helpful to him right now. 

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* newbie * [18 Apr 2007|08:00pm]

[ mood | excited ]

Just want to introduce myself!
My name is Samantha. 
My daughter, Alyssa, was born 11 weeks too soon weighing 3 lbs 3 ozs. 
I had a complicated  pregnancy, labor and post labor recovery.
My daughter struggled in the NICU but I'm happy to say she is now a healthy 3 year old angel!
We have been donating to the March of Dimes since she was born and just recently created a team for WalkAmerica!

My heart goes out to all affect by premature birth!
And I'm very happy to have joined this community

<3 thankx

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catch up at 2? hogwash! [09 Jan 2007|08:33pm]

I have a 30m old iugr 35 weeker. He's supposed to be caught up by 2 with no issues. Well, he's getting speech evaluated and weight eval next week. When does it end? :( Feels like never.
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Having another??? [06 Jan 2007|10:50pm]

[ mood | curious ]

So my husband and I want to have a baby together but we are worried about having it early. I am so lucky to have a healthy boy that I'm not sure if risking it is a good idea... any advice?

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HI [06 Jan 2007|10:43pm]

Your Name & Age: Tara ~ 25
Child(rens) Name & Age: Brandon 7, Tristan 6 (step-son)
Child(rens) Date of Birth: 12/30/99
Born At *how many weeks*: 27
Weight & Length: 2lbs, 14ozs, 16 in.
Tell us about yourself: SAHM, army wife, been married a little over 2 years :)
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Thought I'd Introduce Myself... [02 Jan 2007|11:21pm]

[ mood | contemplative ]

Hi, I'm Tara 25 from Post Falls, Idaho. I have a beautiful baby boy who just turned 7 on Dec. 30th. I thought maybe I could bring some hope as well as get advice from this group.

My mother was born at 32 weeks and has cerebral palsy, I was born at 30 weeks and fortunately I'm healthy. With this said preemies run in our family, so when we found out I was pregnant at 18 everyone cried. We hoped and even my doctors thought there was no reason for me to have anything but a normal pregnancy. Well it all started at about 14 weeks when I started having contractions, the only problem being nobody knew that was what was going on. I was bed ridden with what I was told was the flu and recieving anti-biotic injections in the butt every other day, and taking tylenol constantly to keep my fever down. Just as I was getting to the point of feeling the baby move he dropped and quit moving, meanwhile I was sleeping with my head out the window in the middle of winter. After a series of shots I made it litterally minutes into my 27th week and had a beautiful baby boy. He was actually surprisingly in good shape to start off with, he was 2 lbs 14ozs and 16 inches long, his apgar scores were 8:9!!! and they were able to wait 8 hours before putting him on the vent. Now I am fortunate that we have a NICU within an hour of where I live so visiting was not an issue, however that is where my (our) luck ended. His liver, kidneys, and pancreas were not working as well as having an ASD, a VSD, and of course problems with his pda, also at this point we were already battling retinopathy, as well as lesions in the brain. Of course the docs and nurses want to help but don't try to get your hopes up, so through all this they are telling me he'll never walk, or feed himself, that sort of thing... as if that wasn't enough he got bacterial meningitis. Needless to say the outlook became worse, that he wouldn't even know me as his mother or reach the mentality of a 5 year old. I was with him at least 12 hours a day, usually at night when it was quieter, and despite the doctors orders the nurses let me hold him. I would hum to him and rock while holding him skin to skin, and as his heart and breathing would level out the other babies around us would level out as well. Somehow through all this he was ready to go home only 5 weeks after being born, not only that it was my birthday!!! Two years later I stopped in to say hi, after a cardiology appt., and was greeted with "oh you had another baby!" There have been tons of trials in his life, illnesses that you don't even think of being a danger, but here we are today. Brandon just turned 7, and he plays baseball & soccer, as well as being a grade level ahead in both reading in math... Other than his immune system being a little on the weak side still life is great and he is as healthy as can be.

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[23 Dec 2006|10:37pm]

Your Name & Age: Dawn, 31
Child(rens) Name & Age: Jonah 28m, Justin 3 mo
Child(rens) Date of Birth: Jonah 09/03/04, Justin 09/07/04
Born At *how many weeks*: Jonah - 35 weeks
Weight & Length: 3 lbs 12 oz, 17"
Tell us about yourself: I thought I would join this group to give support to newer moms and answer any late gestation preemie questions if possible. My 35 weeker is now 28m old. He was born with a complete intestinal blockage, which was corrected when he was 3 days old. My 2nd baby was born at 40 weeks with months of bedrest. We live in Portland Oregon. I was born and raised in Hawaii.
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